Sooo with severe cognitive and executive abilities damages from ADT, I spend my day doing mind exercises. Doesn’t help much but hay, it passes the day!!
That being said, I need you to know that if my toilet emptied into my swimming pool, it will take about 2 years to refill it!! Not accounting for evaporation!! So, all the more reason to say “if its yellow, let it mellow!! Save the planet!!!
Jc
There finally are efforts to document and study the brain effects of ADT. It think many MOs are in complete denial about this. Prostate Cancer Foundation had an announcement about this yesterday in their post.
Thats great to hear for the unfortunate brothers to follow!! Water over the dam for me! With the recognition might come the cause and prevention!!!
It’s my experience that the symptoms and the denial are true!! About 18 months ago, my Oncologist admitted that he had always doubted it until a close colleague of his became a victim and was forced to leave his practice!! The woman in me, bawled his eyes out when he told me this!!! The first “Professional” of the many I complained to, finally recognized that I may not be just loosing my mind!!
Thanks
Jc
Most MO’s deny it .
My MO doesnt like the stuff and is working to try and find a solution. Unfortunately it's part of standard of care. But if enough is said about its debilitating effects that could change.
"Standard of Care" has become a false god in the medical world. It is cited as an absolute and that the patient who declined it must be wrong, stupid or crazy. Then the next study comes along and changes the SoC. We all-- oncologists included -- want absolutes in a world where absolutes are few.
With a poor attempt at a joke regarding the added amount of water usage due to increased urination and subsequent flushes, a talking point was born!!!
Causing me to do so more thinking (rut-row gorge)!!!!!
So as I find that stats vary greatly, an estimated 160,000 men will be dx’ed this year in the US alone. Couldn’t find a global number but found a site that claimed that 50% of all men @60yo have PCa. With about 8800 folks on Male-care aPC site, and I have only read about maybe 10 people complaining about a serious decline in cognitive ability (not to be confused with the lesser “brain fog” (no offense but I’ve experienced both)) and less than 10 with declining executive abilities complaints / comments!
Maybe it is “that” rare that it’s a waste of time for the masses of Dr to spend their time on!!! There has to be a logical reason without malice!!!
Jc
Or maybe no one is really looking seriously at it until now. It is relatively easy to study anatomical change but harder to study a subjective thing like brain fog or a fluid thing like loss of cognitive function. It may indeed be rare but when it happens to _you_ it is 100%.
One of the worst parts was not knowing what was going on!!! Not so much committing but defending the multitude of mistakes with normal everyday activities!! Tripling the time to complete tasks and only one task at a time!!! And on and on!!! The wondering if you’ve got dementia!!!!
If I knew it was a possible side effect, and I saw it coming, I could have taken a leave of absence from work in lieu of getting fired!!! I think that hurt most of all!!! I had an excellent reputation as a builder and now couldn’t get hired to build a doghouse. Plus, I couldn’t figure out HOW to build a doghouse now!!!
Wow, that felt good to get of my chest!!!
If there is a victory today, that would be Dr’s advising you of ALL the possibilities and not just no libido and hot flashes!!!
Jc
Did you check out the Prostate Cancer Foundation newsletter? I would contact the physician heading up the study. I am so sorry to read of your losses. Your situation was extreme and exactly why I told my RO and MO that ADT would be the LAST not the FIRST thing I tried. Others like my friend Stew went thru ADT+RT without a lot of trouble beyond hot flushes.
Never heard about a newsletter nor an ongoing study!! Will look into it now though!!!
If knowing what I know now when dx’ed, knowledge from the research I completed, not by professional advice (my DR’s), ADT WOULD NEVER HAD STARTED for me.
I completely understand I am the exception, not the rule!!
I’m careful to include that point when I respond to the newbie’s on HU.
Have to say the brain fog does get better with time, still on Adt but the fog is a lot better now. Only taken 3 years. 🤪🤪🤪
I am also approaching 3yrs got 3mos shot yesterday....and i myself feel the blinds being pulled on me mind...worse first mo. Then lightens but just when you start to come out ....the doc and that large needle reel you back in....and i take erleada on top of lupron....fkn fatigue ...but off to work i go....good day mates....
Hello Jim Jorge, I have found from recent personal experience that 2 to 4 mg of THC at night (in MCT oil) every other day helps with cognitive function - I have less brain fog, stay more on task and have become less forgetful. It also reduces anxiety. Cheers, Phil
It’s funny that you mention that. Was talking to the wife about that last night!!!
I am approved on my state’s med maryjane program. I stopped it months ago because I didn’t want to be stoned all day. With grand kids out of school for the summer, I was “on call” for their parents (my working kids) for sports & etc or just spending time with Grampa!!! Never knew when the phone was going to ring and not driving with a buzz so, I put the pen away.
Now that they are back in school all day, we talked about my trying it again!!!
I admittedly, did not give it a chance!! Used mostly a 25%CBD / 3% THC and saw no benefit from that!! Bought and started using 10%CBD / 35%THC when I stopped for the reasons above! Can find VERY little advice about this so just trial and error on my part!!!
Jc
I take 0.1 to 0.25 ml of a 25 mg/ml THC product that has less than 2 mg/ml of CBD just before bedtime. This is the best way to avoid being stoned - a cup of coffee or tea (better) in the morning will overcome any remaining effects (mild doziness). And I sleep quite well too. I leave the dose in my mouth, swishing it around for about a minute then swallowing. There are indications that 1:1 mixtures of THC:CBD may have decrease the unwanted (ie, stoned) side effects. Cheers, Phil
See, likely out of ignorance, I bought vape!! Don’t know how to gauge the dose!! Looks like I go visit my “bud-tender” and look into some other delivery method!!
Bud-tender(?). If that alone doesn’t take all credibility out of this....nothing will!!!!
Jc
Rick smith oil.....50/50..thc cdb....gooogle it...lil bit on cracker.....nice....i myself vape a 9010 but is sativa...elevates...motivates....not like indicas....im stage 4 and still work conststruction ...and couldnt without natures blessing....educate then medicate....
Cannabis does not do anything positive for my own cognitive functioning. I think that is a personal or individual response variation thing. But I can offer from my current trial of using estradiol patches for ADT in lieu of LHRHa ADT drugs: My cognitive functioning (sharpness, learning, verbal agility, recall and speed of problem solving) is much better on estradiol. My hobbies include studying Sanskrit and reading about physics (quantum foundations and cosmologic astro-physics). These areas were extremely challenging and clearly impaired for me on ADT. (Even though my global understanding of concepts did not seem to be impaired at all.) While on estradiol now all functioning seems to be about 90% as good as when off ADT altogether. Happy.
I am not “officially” on ADT! I went on QoL vacation 10 mo’s ago, however my SE’s are unrelenting, worsening at best!!! I don’t know if I’m currently, to some degree, still ADT or its a new norm, so there is no active treatment to change, just the collateral damage!!!
I’ll know my ADT fate in 2 weeks!!! I’m praying for the continuation of my vacation (👍👍👍) where considering other options are not necessary. However, in the past few weeks, “E patches” have been my main study topic after seeing some posts on HU. I SOOOO much more favor E patches verses Eligard!!!!
If its found necessary to return to ADT, I’ll have my ducks in a row and be ready to speak intelligently with my Dr, anticipating he’ll disapprove!!
Jc
Also, two points that touched me!!!
1) Verbal Agility = Summarized my latest complaint much more eloquently than I’ve been able to!!!
2) ....... global understandings of concepts did not...... If I understand your comment correctly, I see that clearly now that you mention it!!
jc
I asked my local support group (30-40 advanced PCa members, most if not all on some form of ADT) about my feeling that my short term mind function is deteriorating and about a couple of very short but quite disorienting episodes.
I'm 77 and average group age about 67.
Response, much like MO, was it was "...just old age..."
Many had vivid dreams, some had new memory issues, some other "mind" side affects. They all just brushed it off as old age rather than ADT side affects.
Pretty hard to form a study if only a few really care. Even if a study proved a correlation would we be likely to discontinue the main PCa combatant to regain our productive minds just so we can die sooner?
It's a, let's see, my feeble mind is searching for the right word, a conundrum?
2Dee
Conundrum(?). No thanks, I don’t need to practice safe sex!!!
I digress, I can relate in part!! I’ve been told the same thing by many people trying to console me!!! The problem here is (and I want to punch myself in the throat every time I say this, but) mine is like an out of body experience!! Ive got a snapshot in my mind of myself two years ago and I see myself now!!! I saw all this coming on as it was happening!!!
When all of a sudden the schedules, spreadsheets, budgets that you worked with for years are completely illogical, when the math you always did in your head is tedious / impossible on paper, if building mega building was easy but assembling a small toy is impossible, if completely losing a word in the middle of a sentence if you were able to form a sentence in the first place, if you’d rather have a root channel than read a book, it’t not old age!!! It would be too much of a coincidence for that!!!
Yes there were the normal “what did I want in this room” things, but this is immeasurably worse than that!!
“Disorientating episode” Awwwwah, a memory!!! That was my very first complaint!!! While driving normal routes, and only when in the tunnels under Boston, I found myself with no clue where I was or where I was going !!! Just kept driving and it came to me!!!! Reason number 347 that I am unemployable!!!!
As I’ve traveled my 2 1/2 year journey (so far), mostly every complaint that I presented to my healthcare professionals along the way was dismissed as, sort of, my problem and NEVER the drug!!!! Upon locating HU, I would search the individual topics and found numerous men experiencing the same who offered a wealth of information too!!
Although I did not find this site (my PCa encyclopedia) until I was well into my ADT, I learned early on that if I felt something out of line, I’d treat as a likely a side effect. I didn’t let them talk me out of anything!! How many xrays do you let them give you for joint pains?!!! Cognitive Behavioral studies, sleep studies, etc!!!! Nope.... its the drugs!!!!
Jc
What do you judge to be any reversal treatment we can try?
I could always maintain an almost unlimited bunch of thought paths simultaneously (I always felt more so than most) and now struggle with one thought string since shortly after beginning ADT Lupron 7/18.
Perhaps your post can generate some helpful responses.
2Dee
What do you judge to be any reversal treatment we can try?
At my last 3mo Eligard injection, my Dr said that he hoped to see improvement in 6 mo’s. 6mo’s came and went.....nothing!!! Give it another 6 mo’s and that brings us to today +/-! This lead me to believe that “time” was what was needed to reverse the effects!!! That is not panning out too well so far!! I read some post saying 6mo’s, some say 12mo’s and lately one said 3years!!!
Even when I was wicked smot, I’m sure I didn’t have the expertise to figure this out!!! Appears that “time” is the only card in my hand!!! In the meantime, I’m searching for interim fixes to possibly give me a little of the old me back for a while!!! I’ld be happy with a day a week for now!!!
I could always maintain an almost unlimited bunch of thought paths simultaneously (I always felt more so than most) and now struggle with one thought string since shortly after beginning ADT Lupron 7/18.
Yes, my inability to multi-task really hurt!!! No brag just fact, I’d be writing something about one item while thinking about another, while talking about another!!! Float effortlessly from one project to another, one activity to another!!! Lack of concentration and confusion kind of went hand in hand with this loss!!!
Perhaps your post can generate some helpful responses.
I have been throwing chum out for over a year and got a lot of good advice / suggestions but none seem to fit my specific situation as previous stated (e.g. switch from Eligard to E patches).
But yes, I keep trying with hopes that someone new comes along with the answer!! Meanwhile, TICK TOCK!!!!
Jc
Right on!....this is not old age...63...and have had the some of same...my tend to be meltdown episodes...or like you say out of body exp .......like a deep tunnel sometimes.....bw
Im lupron/ erleada 33mos....basicaly since dx...was/am in titan trial...was dx glsn 9...ductal hystoligy ...very aggressive was given 30% 5yr os....so clocks ticking...and want to quit the lupron because...id like my oldself back...but do s say noway
You’ve got quite a bit more of a fight than I!! I didn’t consider mine to be a lethal dx (at this point in time anyway) so...... once again, out of ignorance...... I agreed to ADT after ERT!!! I learned (well after the fact) that the radiation kills the cancer and in my case, the ADT was an insurance policy!!! 1/2 of the ERT broadcasted to the pelvic area for undetected cells and 1/2 to the prostrate gland where the cancer was limited to.
Not to beat a dead horse but hindsight clearly shows me that the drastically altering of the quality of my life, for the worse, was not anywhere near a fair exchange for the estimated 2 to 5% improved success possibilities!!!
Mostly within this post, I am coming to the realization that maybe the extent that Eligard KICKED MY ASS, may, in fact be THAT rare in the global scheme of things!
Whether I can get the old me back again or not, the next time will be very different!!! And don’t any of you bullshit yourselves.....there will be a next time!!! If you don’t take the time in the off season, you’ll never improve your game (aka fight)!!!
Keep on keeping on!!!!
Jc
Been on ADT for 5 years. Name recognition, forgetfulness, etc. All part of it that I can tell. It is hard to determine if age issue or medication issue but I’m thinking (assuming I remember to do so) that ADT has an affect on it.
I am convinced that it was ADT!! It all has happened gradually since I started the treatment!!! I’ve been tested for cognitive behavioral......, dementia and a host of the natural “old age” symptoms. There is no base line to compare my current state to but they did compare to people my age!! I don’t have any clue how (a lot of speculation I assume) but they noted decline in the areas I complained about during my pre test interview!!!
Jc
I dont want this to be misinterpreted...but really if you get to choose wich cancer you get ...i think this is the one..even as aggesive as mine is ive been able to have somewhat of a life. I f'd like a rabbit in younger days and now appreciate....a good hug.....hankie please......i just left mda....friend 63 same age....1 yr with non small cell lung c....and hes going to hospice...he is handleing it well but i find myself saying wtf.....and i know the braintrust here can more than explain ....but if adt has good results at delaying the death knoll.....why isnt there something for others....ive lost several buddies....to the bad cancers...pancreatic,lung,lymphoma...just give you pause for the luck on my side.....but i know the mind fk ..is the same regardless yor malady.......oh just fel a pain in my hip......another met?.....peace out....bw
Does testosterone fluctuate after ADT ends?
Xtandi dosage 
Vacation is over
Things Are Worrying
